Stage IV breast, colorectal, and lung cancer at diagnosis in adults living with intellectual or developmental disabilities: A population-based cross-sectional study.

BACKGROUND: Cancer is a leading cause of death among people living with intellectual or developmental disabilities (IDD). Although studies have documented lower cancer screening rates, there is limited epidemiological evidence quantifying potential diagnostic delays. This study explores the risk of metastatic cancer stage for people with IDD compared to those without IDD among breast (female), colorectal, and lung cancer patients in Canada. METHODS: Separate population-based cross-sectional studies were conducted in Ontario and Manitoba by linking routinely collected data. Breast (female), colorectal, and lung cancer patients were included (Manitoba: 2004-2017; Ontario: 2007-2019). IDD status was identified using established administrative algorithms. Modified Poisson regression with robust error variance models estimated associations between IDD status and the likelihood of being diagnosed with metastatic cancer. Adjusted relative risks were pooled between provinces using random-effects meta-analyses. Potential effect modification was considered. RESULTS: The final cohorts included 115,456, 89,815, and 101,811 breast (female), colorectal, and lung cancer patients, respectively. Breast (female) and colorectal cancer patients with IDD were 1.60 and 1.44 times more likely to have metastatic cancer (stage IV) at diagnosis compared to those without IDD (relative risk [RR], 1.60; 95% confidence interval [CI], 1.16-2.20; RR, 1.44; 95% CI, 1.24-1.67). This increased risk was not observed in lung cancer. Significant effect modification was not observed. CONCLUSIONS: People with IDD were more likely to have stage IV breast and colorectal cancer identified at diagnosis compared to those without IDD. Identifying factors and processes contributing to stage disparities such as lower screening rates and developing strategies to address diagnostic delays is critical.

Projected estimates of cancer in Canada in 2024.

BACKGROUND: Cancer surveillance data are essential to help understand where gaps exist and progress is being made in cancer control. We sought to summarize the expected impact of cancer in Canada in 2024, with projections of new cancer cases and deaths from cancer by sex and province or territory for all ages combined. METHODS: We obtained data on new cancer cases (i.e., incidence, 1984-2019) and deaths from cancer (i.e., mortality, 1984-2020) from the Canadian Cancer Registry and Canadian Vital Statistics Death Database, respectively. We projected cancer incidence and mortality counts and rates to 2024 for 23 types of cancer, overall, by sex, and by province or territory. We calculated age-standardized rates using data from the 2011 Canadian standard population. RESULTS: In 2024, the number of new cancer cases and deaths from cancer are expected to reach 247 100 and 88 100, respectively. The age-standardized incidence rate (ASIR) and mortality rate (ASMR) are projected to decrease slightly from previous years for both males and females, with higher rates among males (ASIR 562.2 per 100 000 and ASMR 209.6 per 100 000 among males; ASIR 495.9 per 100 000 and ASMR 152.8 per 100 000 among females). The ASIRs and ASMRs of several common cancers are projected to continue to decrease (i.e., lung, colorectal, and prostate cancer), while those of several others are projected to increase (i.e., liver and intrahepatic bile duct cancer, kidney cancer, melanoma, and non-Hodgkin lymphoma). INTERPRETATION: Although the overall incidence of cancer and associated mortality are declining, new cases and deaths in Canada are expected to increase in 2024, largely because of the growing and aging population. Efforts in prevention, screening, and treatment have reduced the impact of some cancers, but these short-term projections highlight the potential effect of cancer on people and health care systems in Canada.

Diagnostic routes and time intervals for ovarian cancer in nine international jurisdictions; findings from the International Cancer Benchmarking Partnership (ICBP).

BACKGROUND: International Cancer Benchmarking Partnership Module 4 reports the first international comparison of ovarian cancer (OC) diagnosis routes and intervals (symptom onset to treatment start), which may inform previously reported variations in survival and stage. METHODS: Data were collated from 1110 newly diagnosed OC patients aged >40 surveyed between 2013 and 2015 across five countries (51-272 per jurisdiction), their primary-care physicians (PCPs) and cancer treatment specialists, supplement by treatment records or clinical databases. Diagnosis routes and time interval differences using quantile regression with reference to Denmark (largest survey response) were calculated. RESULTS: There were no significant jurisdictional differences in the proportion diagnosed with symptoms on the Goff Symptom Index (53%; P = 0.179) or National Institute for Health and Care Excellence NG12 guidelines (62%; P = 0.946). Though the main diagnosis route consistently involved primary-care presentation (63-86%; P = 0.068), onward urgent referral rates varied significantly (29-79%; P < 0.001). In most jurisdictions, diagnostic intervals were generally shorter and other intervals, in particular, treatment longer compared to Denmark. CONCLUSION: This study highlights key intervals in the diagnostic pathway where improvements could be made. It provides the opportunity to consider the systems and approaches across different jurisdictions that might allow for more timely ovarian cancer diagnosis and treatment.

Evaluating the impact of the COVID-19 pandemic on cancer screening in a central Canadian province.

We evaluated the impact of COVID-19 on cancer screening in Manitoba, Canada using an interrupted time series (ITS) design and data from Manitoba's population-based, organized cancer screening programs from April 2020 to August 2021. In June 2020 (breast screening was suspended during April and May 2020), there was a 54% decrease between the predicted (i.e., observed data produced from regression models) and expected (i.e., counterfactual values produced for the COVID-19 period by assuming COVID-19 did not occur) number of screening mammograms (ratio = 0.46, 95% Confidence Interval (CI) 0.28-0.64). By December 2020, there was no significant difference between predicted and expected number of screening mammograms (ratio = 0.95, 95% CI 0.80-1.10). In April 2020, there was an 83% decrease in the number of Pap tests (ratio = 0.17, 95% CI 0.04-0.30). By January 2021, there was no significant difference between predicted and expected number of Pap tests (ratio = 0.93, 95% CI 0.81-1.06). In April 2020, there was an 81% decrease in the number of screening program fecal occult blood tests (FOBTs) (ratio = 0.19, 95% CI 0.0-0.44). By September 2020, there was no significant difference between predicted and expected number of FOBTs (ratio = 0.95, 95% CI 0.65-1.24). The estimated cumulative deficit (i.e., backlog) from April 2020 to August 2021 was 17,370 screening mammograms, 22,086 Pap tests, and 5253 screening program FOBTs. Overall, screening programs adapted quickly to the COVID-19 pandemic. Additional strategies may be needed to address remaining backlogs.

Projected estimates of cancer in Canada in 2022.

BACKGROUND: Regular cancer surveillance is crucial for understanding where progress is being made and where more must be done. We sought to provide an overview of the expected burden of cancer in Canada in 2022. METHODS: We obtained data on new cancer incidence from the National Cancer Incidence Reporting System (1984-1991) and Canadian Cancer Registry (1992-2018). Mortality data (1984-2019) were obtained from the Canadian Vital Statistics - Death Database. We projected cancer incidence and mortality counts and rates to 2022 for 22 cancer types by sex and province or territory. Rates were age standardized to the 2011 Canadian standard population. RESULTS: An estimated 233 900 new cancer cases and 85 100 cancer deaths are expected in Canada in 2022. We expect the most commonly diagnosed cancers to be lung overall (30 000), breast in females (28 600) and prostate in males (24 600). We also expect lung cancer to be the leading cause of cancer death, accounting for 24.3% of all cancer deaths, followed by colorectal (11.0%), pancreatic (6.7%) and breast cancers (6.5%). Incidence and mortality rates are generally expected to be higher in the eastern provinces of Canada than the western provinces. INTERPRETATION: Although overall cancer rates are declining, the number of cases and deaths continues to climb, owing to population growth and the aging population. The projected high burden of lung cancer indicates a need for increased tobacco control and improvements in early detection and treatment. Success in breast and colorectal cancer screening and treatment likely account for the continued decline in their burden. The limited progress in early detection and new treatments for pancreatic cancer explains why it is expected to be the third leading cause of cancer death in Canada.

Patient and family financial burden associated with cancer treatment in Canada: a national study.

GOAL: To determine patient-reported financial and family burden associated with treatment of cancer in the previous 28 days across Canada. METHODS: A self-administered questionnaire (P-SAFE v7.2.4) was completed by 901 patients with cancer from twenty cancer centres nationally (344 breast, 183 colorectal, 158 lung, 216 prostate) measuring direct and indirect costs related to cancer treatment and foregone care. Monthly self-reported out-of-pocket-costs (OOPCs) included drugs, homecare, homemaking, complementary/ alternative medicines, vitamins/supplements, family care, accommodations, devices, and "other" costs. Travel and parking costs were captured separately. Patients indicated if OOPC, travel, parking, and lost income were a financial burden. RESULTS: Mean 28-day OOPCs were CA$518 (US Purchase Price Parity [PPP] $416), plus CA$179 (US PPP $144) for travel and CA$84 (US PPP $67) for parking. Patients self-reporting high financial burden had total OOPCs (33%), of CA$961 (US PPP $772), while low-burden participants (66%) had OOPCs of CA$300 (US PPP $241). "Worst burden" respondents spent a mean of 50.7% of their monthly income on OOPCs (median 20.8%). Among the 29.4% who took time off work, patients averaged 18.0 days off. Among the 26.0% of patients whose caregivers took time off work, caregivers averaged 11.5 days off. Lastly, 41% of all patients had to reduce spending. Fifty-two per cent of those who reduced spending were families earning < CA$50,000/year. CONCLUSIONS: In our Canadian sample, high levels of financial burden exist for 33% of patients, and the severity of burden is higher for those with lower household incomes.

Projected estimates of cancer in Canada in 2020.

BACKGROUND: Cancer projections to the current year help in policy development, planning of programs and allocation of resources. We sought to provide an overview of the expected incidence and mortality of cancer in Canada in 2020 in follow-up to the Canadian Cancer Statistics 2019 report. METHODS: We obtained incidence data from the National Cancer Incidence Reporting System (1984-1991) and Canadian Cancer Registry (1992-2015). Mortality data (1984-2015) were obtained from the Canadian Vital Statistics - Death Database. All databases are maintained by Statistics Canada. Cancer incidence and mortality counts and age-standardized rates were projected to 2020 for 23 cancer types by sex and geographic region (provinces and territories) for all ages combined. RESULTS: An estimated 225 800 new cancer cases and 83 300 cancer deaths are expected in Canada in 2020. The most commonly diagnosed cancers are expected to be lung overall (29 800), breast in females (27 400) and prostate in males (23 300). Lung cancer is also expected to be the leading cause of cancer death, accounting for 25.5% of all cancer deaths, followed by colorectal (11.6%), pancreatic (6.4%) and breast (6.1%) cancers. Incidence and mortality rates will be generally higher in the eastern provinces than in the western provinces. INTERPRETATION: The number of cancer cases and deaths remains high in Canada and, owing to the growing and aging population, is expected to continue to increase. Although progress has been made in reducing deaths for most major cancers (breast, prostate and lung), there has been limited progress for pancreatic cancer, which is expected to be the third leading cause of cancer death in Canada in 2020. Additional efforts to improve uptake of existing programs, as well as to advance research, prevention, screening and treatment, are needed to address the cancer burden in Canada.

Progress in cancer survival, mortality, and incidence in seven high-income countries 1995-2014 (ICBP SURVMARK-2): a population-based study.

BACKGROUND: Population-based cancer survival estimates provide valuable insights into the effectiveness of cancer services and can reflect the prospects of cure. As part of the second phase of the International Cancer Benchmarking Partnership (ICBP), the Cancer Survival in High-Income Countries (SURVMARK-2) project aims to provide a comprehensive overview of cancer survival across seven high-income countries and a comparative assessment of corresponding incidence and mortality trends. METHODS: In this longitudinal, population-based study, we collected patient-level data on 3·9 million patients with cancer from population-based cancer registries in 21 jurisdictions in seven countries (Australia, Canada, Denmark, Ireland, New Zealand, Norway, and the UK) for seven sites of cancer (oesophagus, stomach, colon, rectum, pancreas, lung, and ovary) diagnosed between 1995 and 2014, and followed up until Dec 31, 2015. We calculated age-standardised net survival at 1 year and 5 years after diagnosis by site, age group, and period of diagnosis. We mapped changes in incidence and mortality to changes in survival to assess progress in cancer control. FINDINGS: In 19 eligible jurisdictions, 3 764 543 cases of cancer were eligible for inclusion in the study. In the 19 included jurisdictions, over 1995-2014, 1-year and 5-year net survival increased in each country across almost all cancer types, with, for example, 5-year rectal cancer survival increasing more than 13 percentage points in Denmark, Ireland, and the UK. For 2010-14, survival was generally higher in Australia, Canada, and Norway than in New Zealand, Denmark, Ireland, and the UK. Over the study period, larger survival improvements were observed for patients younger than 75 years at diagnosis than those aged 75 years and older, and notably for cancers with a poor prognosis (ie, oesophagus, stomach, pancreas, and lung). Progress in cancer control (ie, increased survival, decreased mortality and incidence) over the study period was evident for stomach, colon, lung (in males), and ovarian cancer. INTERPRETATION: The joint evaluation of trends in incidence, mortality, and survival indicated progress in four of the seven studied cancers. Cancer survival continues to increase across high-income countries; however, international disparities persist. While truly valid comparisons require differences in registration practice, classification, and coding to be minimal, stage of disease at diagnosis, timely access to effective treatment, and the extent of comorbidity are likely the main determinants of patient outcomes. Future studies are needed to assess the impact of these factors to further our understanding of international disparities in cancer survival. FUNDING: Canadian Partnership Against Cancer; Cancer Council Victoria; Cancer Institute New South Wales; Cancer Research UK; Danish Cancer Society; National Cancer Registry Ireland; The Cancer Society of New Zealand; National Health Service England; Norwegian Cancer Society; Public Health Agency Northern Ireland, on behalf of the Northern Ireland Cancer Registry; The Scottish Government; Western Australia Department of Health; and Wales Cancer Network.

Projection du fardeau du cancer au Canada en 2024.

CONTEXTE: Les données de surveillance du cancer sont essentielles pour mieux comprendre les lacunes et les progrès réalisés dans la lutte contre le cancer. Nous avons cherché à résumer les répercussions prévues du cancer au Canada en 2024, en effectuant des projections sur les nouveaux cas de cancer et les décès par cancer, par sexe et par province ou territoire, pour tous les âges confondus. MÉTHODES: Nous avons obtenu les données sur les nouveaux cas de cancer (c.-à-d., l'incidence, 1984­2019) et les décès par cancer (c.-à-d., la mortalité, 1984­2020) du Registre canadien du cancer et de la Base canadienne de données de l'état civil ­ Décès, respectivement. Nous avons projeté les chiffres et les taux d'incidence du cancer et de mortalité jusqu'en 2024 pour 23 types de cancer, par sexe et par province ou territoire. Nous avons calculé des taux normalisés selon l'âge au moyen de données de la population type canadienne de 2011. RÉSULTATS: En 2024, les nombres de nouveaux cas de cancer et de décès causés par le cancer devraient atteindre 247 100 et 88 100, respectivement. Le taux d'incidence normalisé selon l'âge (TINA) et le taux de mortalité normalisé selon l'âge (TMNA) devraient diminuer légèrement par rapport aux années précédentes, tant chez les hommes que chez les femmes, avec des taux plus élevés chez les hommes (TINA de 562,2 pour 100 000, et TMNA de 209,6 pour 100 000 chez les hommes; TINA de 495,9 pour 100 000 et TMNA de 152,8 pour 100 000 chez les femmes). Les TINA et les TMNA de plusieurs cancers courants devraient continuer à diminuer (p. ex., cancer du poumon, cancer colorectal et cancer de la prostate), tandis que ceux de plusieurs autres cancers devraient augmenter (p. ex., cancer du foie et des voies biliaires intrahépatiques, cancer du rein, mélanome et lymphome non hodgkinien). INTERPRÉTATION: Bien que l'incidence globale du cancer et la mortalité connexe sont en déclin, il devrait y avoir une augmentation des nouveaux cas et des décès au Canada en 2024, en grande partie en raison de la croissance et du vieillissement de la population. Les efforts en matière de prévention, de dépistage et de traitement ont atténué les répercussions de certains cancers, mais ces projections à court terme soulignent l'effet potentiel du cancer sur les gens et les systèmes de soins de santé au Canada.

Investigation of the international comparability of population-based routine hospital data set derived comorbidity scores for patients with lung cancer.

INTRODUCTION: The International Cancer Benchmarking Partnership (ICBP) identified significant international differences in lung cancer survival. Differing levels of comorbid disease across ICBP countries has been suggested as a potential explanation of this variation but, to date, no studies have quantified its impact. This study investigated whether comparable, robust comorbidity scores can be derived from the different routine population-based cancer data sets available in the ICBP jurisdictions and, if so, use them to quantify international variation in comorbidity and determine its influence on outcome. METHODS: Linked population-based lung cancer registry and hospital discharge data sets were acquired from nine ICBP jurisdictions in Australia, Canada, Norway and the UK providing a study population of 233 981 individuals. For each person in this cohort Charlson, Elixhauser and inpatient bed day Comorbidity Scores were derived relating to the 4-36 months prior to their lung cancer diagnosis. The scores were then compared to assess their validity and feasibility of use in international survival comparisons. RESULTS: It was feasible to generate the three comorbidity scores for each jurisdiction, which were found to have good content, face and concurrent validity. Predictive validity was limited and there was evidence that the reliability was questionable. CONCLUSION: The results presented here indicate that interjurisdictional comparability of recorded comorbidity was limited due to probable differences in coding and hospital admission practices in each area. Before the contribution of comorbidity on international differences in cancer survival can be investigated an internationally harmonised comorbidity index is required.

Examining the Selection Criteria of Neoadjuvant Chemotherapy Patients.

OBJECTIVES: To identify predictors of neoadjuvant chemotherapy (NAC) and to examine toxicities, dose reduction, interruptions, and second-line chemotherapy MATERIALS AND METHODS: A retrospective chart review of 391 patients with late-stage ovarian cancer diagnosed between January 1, 2004 and December 31, 2010 was conducted. Logistic regression was used to predict chemotherapy type. Cumulative incidence of toxicities, dose reduction, and treatment interruption were calculated using the Kaplan-Meier method. Overall survival was analyzed using time-varying Cox regression models. A competing risk model was used to predict second-line chemotherapy with death as a competing risk. RESULTS: Older patients were less likely to receive primary debulking (OR 0.710; 95% CI 0.55-0.92, P = 0.0108), as were patients with longer diagnostic intervals. Clear-cell, endometrioid, and mucinous carcinoma were more likely to receive adjuvant treatment than unclassified epithelial (OR 6.964; 95% CI 2.02-24.03, P = 0.0021). Adjuvant patients experienced higher incidence of chemotherapy toxicities (P <0.0001) and treatment interruption (P = 0.016) at 3 months. There was no statistically significant difference in the incidence of chemotherapy dose reduction of >20% in the NAC and adjuvant populations (P = 0.142). Neoadjuvant patients were more likely to require more than one line of chemotherapy ([Subhazard Ratio] = 4.334; 95% CI 2.51-7.50, P <0.0001). CONCLUSION: Our study found that patients with shorter diagnostic intervals, more advanced age, and unclassified epithelial histotype were more likely to receive NAC. NAC patients did not experience a higher incidence of chemotherapy toxicities, treatment interruption, or dose reduction. There is treatment selection bias for sicker patients being treated with NAC.

Can you un-ring the bell? A qualitative study of how affect influences cancer screening decisions.

BACKGROUND: The belief that early detection is the best protection against cancer underlies cancer screening. Emerging research now suggests harms associated with early detection may sometimes outweigh the benefits. Governments, cancer agencies, and organizations that publish screening guidelines have found it is difficult to "un-ring the bell" on the message that "early detection is your best protection" because of its widespread communication and enduring resonance. This study explores affective factors-and their interplay with relevant analytical factors-in public/laypersons' decision making about cancer screening. METHODS: A total of 93 people (47 men, 46 women) attended focus groups about, respectively, prostate cancer screening and breast cancer screening in two Canadian cities. RESULTS: Affective factors were a major influence on many focus group participants' decision making about cancer screening, including fear of cancer and a generalized enthusiasm for prevention/screening, and they were often inspired by anecdotes about the cancer experiences of family and friends. Affect also existed alongside more analytical factors including assessments of reduced risk in the management of any cancer diagnosis if caught early, and, for men, the belief that an unreliable test is "better than nothing," and that men deserve prostate cancer screening because women have breast and cervical cancer screening. Affective factors were particularly noticeable in the sub-groups most supportive of screening and the "early detection" message: older women who felt that mammogram screening should begin at age 40 rather than 50, and older men who felt that prostate cancer screening should be expanded beyond its current unorganized, opportunistic usage. In contrast, younger participants displayed less affective attachments to "early detection" messages and had greater concerns about harms of screening and were more receptive to nuanced messages informed by evidence. CONCLUSION: Policymakers attempting to communicate more nuanced versions of the "early detection" message need to understand the role of affect alongside other judgments brought into laypersons' decision making processes and anticipate how affective responses to their messages will be shaped, transformed, and potentially subverted by external forces beyond their control. Particularly overt external factors are campaigns by cancer advocacy organizations actively promoting breast and prostate cancer awareness and screening to younger women and men using affectively-charged messages.

Examining the Effects of Time to Diagnosis, Income, Symptoms, and Incidental Detection on Overall Survival in Epithelial Ovarian Cancer: Manitoba Ovarian Cancer Outcomes (MOCO) Study Group.

OBJECTIVE: The primary objectives of this study were to analyze data on time to diagnosis and correlate this with overall survival. We secondarily analyzed the effects of emergency room visits, symptoms, incidental findings, residence, socioeconomic status, and residual disease on overall survival. METHODS: This retrospective population-based descriptive cohort study examined all invasive ovarian cancer cases in Manitoba, Canada, between 2004 and 2010. Clinicopathologic, socioeconomic, and outcome data were collected. Analysis was performed with Cox and logistic regression stratified by early and late stage. RESULTS: Six hundred eighty-seven ovarian cancer patients were identified, with a final cohort of 601 patients: 210 with early-stage (1/2) and 391 with late-stage (3/4) disease. No presenting symptoms were associated with survival outcome. Poorer survival was associated with increasing age (P = 0.0016) and neoadjuvant chemotherapy (P = 0.0037). Higher income within the urban setting was also associated with a survival advantage (P = 0.0037), whereas initial presentation to the emergency room (P = 0.0399) was associated with decreased survival. Finally, for advanced-stage disease, incidental diagnosis had a significantly improved overall survival (hazard ratio, 0.424; 95% confidence interval, 0.27-0.67; P = 0.0003), even when accounting for confounding factors. Time from first presentation to diagnosis was associated with survival (P = 0.0309). CONCLUSIONS: This study found that time to diagnosis did not negatively impact overall survival, although there was an association. Age, morphology, treatment type, residual disease, medical comorbidities, and income were significant prognostic factors. This is the first study to show a survival advantage to incidentally finding an ovarian cancer. Further research is needed on the outcomes of pelvic examination.

Primary care physician use across the breast cancer care continuum: CanIMPACT study using Canadian administrative data.

OBJECTIVE: To describe primary care physician (PCP) use and continuity of PCP care across the breast cancer care continuum. DESIGN: Population-based, retrospective cohort study using provincial cancer registries linked to health administrative databases. SETTING: British Columbia, Manitoba, and Ontario. PARTICIPANTS: All women with incident invasive breast cancer from 2007 to 2012 in Manitoba and Ontario and from 2007 to 2011 in British Columbia. MAIN OUTCOME MEASURES: The number and proportions of visits to PCPs were determined. Continuity of care was measured using the Usual Provider of Care index calculated as the proportion of visits to the most-often-visited PCP in the 6 to 30 months before a breast cancer diagnosis (baseline) and from 1 to 3 years following a breast cancer diagnosis (survivorship). RESULTS: More than three-quarters of patients visited their PCPs 2 or more times during the breast cancer diagnostic period, and more than 80% of patients had at least 1 PCP visit during breast cancer adjuvant treatment. Contact with the PCP decreased over time during breast cancer survivorship. Of the 3 phases, women appeared to be most likely to not have PCP contact during adjuvant treatment, with 10.7% (Ontario) to 18.7% (British Columbia) of women having no PCP visits during this phase. However, a sizable minority of women had at least monthly visits during the treatment phase, particularly in Manitoba and Ontario, where approximately a quarter of women saw a PCP at least monthly. We observed higher continuity of care with PCPs in survivorship (compared with baseline) in all provinces. CONCLUSION: Primary care physicians were generally involved throughout the breast cancer care continuum, but the level of involvement varied across care phases and by province. Future interventions will aim to further integrate primary and oncology care.

Mammography rates for breast cancer screening: a comparison of First Nations women and all other women living in Manitoba, Canada, 1999-2008.

INTRODUCTION: First Nations (FN) women historically have low rates of preventive care, including breast cancer screening. We describe the frequency of breast cancer screening among FN women living in Manitoba and all other Manitoba (AOM) women after the introduction of a provincial, organized breast screening program and explore how age, area of residence, and time period influenced breast cancer screening participation. METHODS: The federal Indian Registry was linked to 2 population-based, provincial data sources. A negative binomial model was used to compare breast cancer screening for FN women with screening for AOM women. RESULTS: From 1999 through 2008, 37% of FN and 59% of AOM women had a mammogram in the previous 2 years. Regardless of area of residence, FN women were less likely to have had a mammogram than AOM women (relative rate [RR] = 0.69 in the north, RR = 0.55 in the rural south, and RR = 0.53 in urban areas). CONCLUSIONS: FN women living in Manitoba had lower mammography rates than AOM women. To ensure equity for all Manitoba women, strategies that encourage FN women to participate in breast cancer screening should be promoted.

Using personal health insurance numbers to link the Canadian Cancer Registry and the Discharge Abstract Database.

BACKGROUND: Linking cancer registry and administrative data can reveal health care use patterns among cancer patients. The Canadian Cancer Registry (CCR) contains personal health insurance numbers (HINs) that facilitate linkage to hospitalization information in the Discharge Abstract Database (DAD). DATA AND METHODS: Valid HINs, captured in the CCR or obtained through probabilistic linkages to provincial health insurance registries, were used to deterministically link prostate, female breast, colorectal and lung cancers diagnosed from 2005 through 2008 with the DAD for fiscal years 2004/2005 to 2010/2011. RESULTS: At least 98% of tumours diagnosed from 2005 through 2008 had valid HINs in the CCR or obtained through probabilistic linkages. For provinces submitting day surgeries to the DAD, linkage rates to at least one DAD record were higher for female breast (95.6% to 98.1%), colorectal (96.9% to 98.7%) and lung cancers (92.8% to 96.3%) than for prostate cancers (77.2% to 91.6%). Among linked records, agreement was high for sex (99% or more) and complete date of birth (97% or more); the likelihood of a consistent diagnosis in the CCR and on at least one linked DAD record was higher for female breast (86.8% to 97.2%), colorectal (94.6% to 97.7%) and lung cancers (90.3% to 95.5%) than for prostate cancers (77.4% to 87.8%). INTERPRETATION: Deterministically linking the CCR and DAD using personal HINs is a feasible and valid approach to obtaining hospitalization information about cancer patients.

Acute promyelocytic leukaemia is characterized by stable incidence and improved survival that is restricted to patients managed in leukaemia referral centres: a pan-Canadian epidemiological study.

Timely diagnosis and care are major determinants of the outcome in acute promyelocytic leukaemia (APL), a malignancy whose incidence may be increasing. The Canadian Cancer Registry (CCR) and health system represent valuable settings to study APL epidemiology. We analysed the CCR, which contains data on all Canadians with APL. To provide clinical information lacking in the CCR, we obtained data from five leukaemia referral centres during a similar time period. Between 1993 and 2007, there were 399 APL in Canada. Age-standardized incidence was 0·083/100,000 and was stable over time. The early death (ED) rate was 21·8% (10·6% in patients <50 years old and 35·5% for those aged >50 years), with no improvement over time. Five-year overall survival (OS) was 54·6% (73·3% in patients <50 years; 29·1% older patients). In the referral cohort, 131 patients were diagnosed between 1999 and 2010. ED was 14·6% and 2-year OS was 76·5%. Within this cohort, ED and OS improved over time, although advanced patient age remained an adverse determinant of OS. In Canada, APL incidence is unexpectedly low and temporally stable. ED was higher than reported in clinical trials, but similar to reports from other registries. In contrast, ED was lower in referral centres and improved with time.

Does access to a colorectal cancer screening website and/or a nurse-managed telephone help line provided to patients by their family physician increase fecal occult blood test uptake?: results from a pragmatic cluster randomized controlled trial.

BACKGROUND: Evaluation of the effectiveness of a patient decision aid (nurse-managed telephone support line and/or colorectal cancer screening website), distributed to patients by their family physician, in improving fecal occult blood test (FOBT) colorectal cancer screening rates. METHODS: A pragmatic, two arm, cluster randomized controlled trial in Winnipeg, Manitoba, Canada (39 medical clinic clusters; 79 fee-for-service family physicians; 2,395 average risk patients). All physicians followed their standard clinical screening practice. Intervention group physicians provided a fridge magnet to patients that facilitated patient decision aid access. Primary endpoint was FOBT screening rate within four months.Multi-level logistic regression to determine effect of cluster, physician, and patient level factors on patient FOBT completion rate. ICC determined. RESULTS: Family physicians were randomized to control (n = 39) and intervention (n = 40) groups. Compared to controls (56.9%; n = 663/1165), patients receiving the intervention had a higher FOBT completion rate (66.6%; n = 805/1209; OR of 1.47; 95% confidence interval 1.06 to 2.03; p < 0.02). Patient aid utilization was low (1.1%; 13/1,221) and neither internet nor telephone access affected screening rates for the intervention group. FOBT screening rates differed among clinics and physicians (p < 0.0001). Patients whose physician promoted the FOBT were more likely to complete it (65%; n = 1140/1755) compared to those whose physician did not (51.1%; n = 242/470; p < 0.0001; OR of 1.54 and 95% CI of 1.23 to 1.92). Patients reporting they had done an FOBT in the past were more likely to complete the test (70.6%; n = 1141/1616; p < 0.0001; 95% CI 2.51 to 3.73) than those who had not (43%; n = 303/705). Patients 50-59 years old had lower screening rates compared to those over 60 (p < 0.0001). 75% of patients completing the test did so in 34 days. CONCLUSION: Despite minimal use of the patient aid, intervention group patients were more likely to complete the FOBT. Powerful strategies to increase colorectal cancer screening rates include a recommendation to do the test from the family physician and focusing efforts on patients age 50-59 years to ensure they complete their first FOBT. TRIAL REGISTRATION NUMBER: clinicaltrials.gov identifier NCT01026753.

Development and validation of the Short-Form Survivor Unmet Needs Survey (SF-SUNS).

PURPOSE: The Survivor Unmet Needs Survey (SUNS) is one of the only unmet needs measures that was developed and evaluated utilising a population-based sample of cancer survivors. At 89 items, the current scale is quite burdensome. The current study aimed to develop a valid and reliable short version of this survey. METHODS: A heterogeneous sample of 1,589 cancer survivors, aged 19 years or over at diagnosis, diagnosed with a histologically confirmed cancer in the previous 12 to 60 months, completed the SUNS. Using these data, we employed a combined theoretical and statistical method of reducing the number of items in the SUNS. The shortened survey was examined for construct validity, internal consistency, discriminant validity and floor and ceiling effects. RESULTS: Fifty-nine items were removed. Construct validity closely reflected the original structure of the SUNS. However, all items from the Emotional health and Relationships domains loaded onto one factor. Cronbach's alpha for the final four domains were 0.85 or above, demonstrating strong internal consistency. Intra-class correlations of the three domains from the original survey (Financial concerns, Information and Access and continuity of care) and shortened survey were high (>0.9). Discriminant validity illustrated the short-form SUNS' ability to discriminate between those who had recently received treatment and those who had not. CONCLUSIONS: This study describes the development and psychometric evaluation of the short-form SUNS (SF-SUNS). Future studies should confirm the test-retest reliability and predictive validity of the SF-SUNS utilising large, independent, population-based samples of cancer survivors.